Why I'd Like to Change the Name of ME/CFS to 'Gray Area'

“What is your disability?”

I have had myalgic encephalomyelitis since I was in high school — almost 20 years now. Of all the questions people ask about the nature of my illness, this is the question I hate answering the most. You would think the name would be the most straightforward of all; but when professionals have given your condition a name that is practically pejorative, the easiest question may be the hardest to answer accurately.

The medical community in the United States calls my disability “chronic fatigue syndrome,” a name that belies the exhaustion and inability to function that patients face after even mild exertion. Even many doctors get the wrong impression when they hear it: “depressed,” “drug-seeking,” “attention craving,” “lazy” and “unable to cope” are some of the conclusions that otherwise reputable doctors have jumped to when I mention my diagnosis.

In my personal life, I choose to use the term that is widely used outside the US — myalgic encephalomyelitis — but doctors don’t appreciate the “attention-seeking” aspect of trying to change your diagnosis from its “accepted” label.

As outlined in Ryan Prior’s movie Forgotten Plague, a bad name can become a vicious cycle for a misunderstood and underfunded illness. Experts insist that a better name cannot be found until the cause of ME/CFS is discovered. But due in part to the ridiculous name, ME/CFS is not taken seriously enough to get the funding it needs to find a cause. Without naming a cause, the name won’t be changed… And on it goes.

Patients have lobbied for a name change practically since the current one was proposed. A couple years ago, it seemed as though we would finally get our wish when a new name was announced: systemic exertion intolerance disease. The backlash was immediate. “Exertion intolerance” sounded a lot like laziness to the general public. Of the dozens of patients and doctors I know, only one patient has adopted the new name.

“What is your disability?” How do I answer a question for which there is no short answer? While I am far from the first frustated patient to do so, I’d like to propose a name of my own, one that encompasses the effect ME has on nearly all areas of my life. I would like to change the name of my disability to “Gray Area.”

As ME patients go, I have maintained a relatively high level of function. I work (half days), drive, and can perform most of my daily personal care routine without help. On a good week, I can even socialize with friends for an hour or two. My life doesn’t look “normal” to healthy people, but I know my level of functioning is enviable to many others who share my diagnosis. It’s a “gray area” between disability and being able-bodied, so much so that I can even fool myself until the “crash” inevitably occurs.

I am grateful every day for the level of functioning I have achieved, but it’s a “gray area” when seeking validation from medicine or the law. There is insufficient proof for me to receive disability benefits, despite my inability to consistently work even 20 hours a week. The judges don’t care that working more than a half day makes me too exhausted to eat supper when I get home; as long as I can technically drag myself through a day without an ambulance being called, it doesn’t matter whether I lose everything else. I have asked professionals what I should do — take on more hours while sacrificing my performance both on the job and at home? Or take a smaller paycheck in order to ensure that I can be more reliable for my employer and myself? I’m told it’s a “gray area.”

How do I survive with so little money coming in? Honestly, I am held up by the sacrifices of my loved ones. If it weren’t for my parents and husband, I would be homeless or worse. As a part-time employee with many gaps in my work history, I will never pay all my bills or sign for a loan by myself. It’s a humbling “gray area” knowing the only thing standing between me and total poverty is for my loved ones to maintain their financial security in the absence of my own.

Socializing with ME happens infrequently. Even talking on the phone or texting is often too taxing after work. The unpredictable nature of my illness means I have to cancel or change plans more often than not. My social circle grew smaller but much closer after the onset of ME. I love the friends who understand when I have to change our night out to a Netflix date at the last minute; they are willing to spend time in the “gray area” with me, which makes it a far more bearable place to be.

“Gray area” all too accurately describes my medical care. There are few accepted treatments for ME, and none of them work reliably for all patients. I ask for treatment options, and I am told nothing can make me do better than I am currently. Yet I am never well enough to have financial security, children, or many of the other things my doctors take for granted in their own lives. “Why can’t I get help?” I ask. “You’re in a gray area,”  they say. I am denied referrals for both mental and physical problems because someone out there is always sicker, and the system dictates that all of us must fight for the same openings. When you have an illness that doctors don’t understand, there is simply not enough care to go around.

The only way to fight the “gray area” is to find color in the little things. Getting my graphic design degree in school, I gravitated toward color combos of bright purple and lime green. I take too many photos of my pets and the outdoors. My favorite playlist is all happy songs. I cook with as many bright fruits and veggies as I can pack into a meal. I fight like hell for recognition of my disability so that we patients and our loved ones can move out of the “gray area” and into a cure. I won’t give up on getting my technicolor life back. Until then, I’ll color outside the lines of that “gray area” any chance I get.

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